Wednesday, April 22, 2015

Lyme Disease Patients to Stage Multiday Protest at IDSA Headquarters

Lyme Disease Patients to Stage Multiday Protest at IDSA Headquarters 

Lyme Disease Patients to Stage Multiday Protest at ... The Mayday Project Lyme patient advocacy group announced that it is moving forward with plans for a two-day protest at the headquarters of the Infec... 
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The Mayday Project maintains that the IDSA's guidelines for the diagnosis and treatment of Lyme disease harm patients who are routinely misdiagnosed and unable to obtain medically necessary treatment due to the restrictions imposed by the guidelines. 

Mayday Project co-founder Josh Cutler has been fighting late-stage neurological Lyme disease for nine years. This condition affects the brain, the central nervous system, and the autonomic nervous system that regulates blood pressure and other vital functions.Cutler says, "We are uniting to demand that IDSA stop its misrepresentation of science, end its conflicts of interest, and fix its guidelines for Lyme." 

Controversy about Lyme disease has divided the medical community and led to the creation of the International Lyme and Associated Diseases Society (ILADS), which has published its own guidelines for Lyme. ILADS and IDSA guidelines differ in virtually every aspect, including the testing, diagnosis, and treatment of Lyme disease as well as the definition of Lyme disease. 

IDSA states that Lyme is easy to diagnose and simple to treat with a limited course of antibiotics. According to the IDSA guidelines, chronic Lyme does not exist and long-term treatment is not warranted. ILADS argues that Lyme disease is a national health crisis of epidemic proportion that needs to be treated aggressively and often requires long-term treatment beyond the limits set by IDSA. 

ILADS guidelines recognize chronic Lyme disease and recommend that the "duration of therapy be guided by clinical response, rather than by an arbitrary treatment course. "Large numbers of Lyme patients remain seriously ill despite receiving the IDSA-recommended two- to four-week course of antibiotic treatment. 
A 2013 study by John Aucott of Johns Hopkins University shows that over 30 percent of patients who are diagnosed and treated in the acute stage of Lyme disease continue to have ongoing illness. Debilitation can include being homebound, bedbound, or wheelchair dependent. 

Kenneth Liegner, MD, who specializes in internal medicine, critical care, Lyme disease, and related illnesses, suggests that IDSA has neglected to consider the large body of scientific evidence that chronic Lyme exists and is widespread. Liegner practices in Pawling, New York, near the epicenter of the Lyme epidemic. In a September 2010 letter to the Institute of Medicine, he wrote:"Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease. . . . The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease." 

On March 9, IDSA released a project plan to update their guidelines. The plan includes a thirty-day period for public comments. Patient advocates have expressed serious concerns there will be a repeat of the 2009 review of the guidelines, which ignored extensive scientific evidence for the existence of chronic Lyme disease. 

According to the article Lyme Disease: the Next Decade "The review panel held a public hearing that featured more than 300 peer-reviewed articles and 1600 pages of analysis supporting the concept of persistent infection despite short-course antibiotic therapy of 2 to 4 weeks in patients with persistent Lyme disease symptoms. Despite this extensive evidence, the IDSA review panel voted unanimously to uphold the flawed Lyme guidelines." 

On March 20, representatives from Mayday met with IDSA President, Dr. Stephen Calderwood, to discuss concerns about the plan for updating the guidelines. 

During the meeting, Mayday requested that representatives from patient support groups and physicians in private practice who specialize in treating tick-borne illnesses be added to the review panel. Mayday also asked Calderwood to write a letter to Congress requesting more funding for research and expressed strong concerns about the inclusion of panelists with significant conflicts of interests. 

The Lyme Disease Association report, Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines, documents the most serious conflicts of interests among members of IDSA's review panels. 

In November 2006, Connecticut Attorney General Richard Blumenthal, now a U.S. Senator, launched an investigation of IDSA, based on allegations of abuses of monopoly power and exclusionary conduct, in violation of antitrust law. In a May 2008 press release Blumenthal said, "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science." 

IDSA reached a consent agreement with Blumenthal's office calling for the creation of a review panel to thoroughly scrutinize the 2006 guidelines. In 2009, the guidelines were reviewed, but no significant changes were made, despite the large body of peer-reviewed evidence for the existence of chronic Lyme disease that was presented to the panel. According to Blumenthal, the panel used an "improper voting procedure," based on a process of its own design, which undermined the integrity of the voting process and violated the consent agreement

Mayday held its first protest at IDSA headquarters in May 2014. IDSA released a statement that they were "listening," but no action was taken regarding the guidelines, so Mayday held a follow-up candlelight vigil and protest at IDSA's IDWeek medical conference in October 2014. During the conference, Mayday released an open letter to IDSA members calling on them to intervene on the behalf of patients to help rectify the guidelines in the interest of improving patient care. 

Call to Action 
Josh Cutler and co-founder Allison Caruana are calling on patients and others touched by Lyme to stand together and make a difference. 

"We expect hundreds to attend," says Caruana, whose five children contracted Lyme disease at birth. "Patients are suffering and angry about the handling of the Lyme epidemic. They want access to treatment. They want better tests. They want insurance coverage that doesn't end when treatment fails. They want doctors to stop telling them it's all in their heads. And most fundamentally, they want the IDSA to place the health of patients ahead of professional biases and self-interest." 

Event Details 
The event will take place on the public sidewalks surrounding IDSA headquarters at 1300 Wilson Boulevard, Arlington, VA, across the street from the Hyatt Arlington and one block from the Rosslyn Metro station. 

The event begins with a Wednesday evening meet and greet and conference. The conference includes a presentation by the National Capital Lyme Disease Association on "The Necessity of Investigative Hearings," and a presentation about the "The Science the Media Needs to Know." 

Rallies and demonstrations will be conducted Thursday and Friday. A group Lyme Disease Challenge is planned ‎Thursday afternoon, with the goal of taking the largest bite out of Lyme disease yet. A candlelight vigil will be held Thursday evening to honor those who lost their lives while battling chronic Lyme disease. 

Patients who are too sick to attend are encouraged to send a pair of shoes to IDSA to highlight the extent of the epidemic of chronic Lyme disease. Attendees are encouraged to bring footwear from Lyme patients to commemorate those who are unable to attend. 

Wednesday, April 29 
Advocate Conference from 4 p.m. to 9 p.m. at the Holiday Inn, Rosslyn, VA 
Thursday, April 30 
Rally from 7:00 a.m. to 3:00 p.m. 
Candlelight vigil from 6:45 p.m. to 8:30 p.m. 
Friday, May 1 
Rally from 7:00 a.m. to 3:00 p.m. 
For more details and to register, visit 

About the Mayday Project 
The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, increased education for physicians, and more funding for research. 
For more information, visit

The Infectious Diseases Society of America Lyme Guidelines: a Cautionary Tale About the Development of Clinical Practice Guidelines 
Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey 
HMO Abuse of Lyme Disease Surveillance Case Definition 
Review of evidence for immune evasion and persistent infection in Lyme disease 

Tuesday, April 21, 2015

Lyme Patient Advocates Denounce Intellectual Conflicts of Interest

Lyme Patient Advocates Denounce Intellectual Conflicts of Interest for Seven IDSA Guidelines Review Panelists

ARLINGTON, VA, Tuesday, April 21—The Mayday Project—a volunteer organization comprised of those touched by Lyme disease—wants to know the answer to the question: How can certain members of the Infectious Diseases Society of America (IDSA) review panel, those with entrenched intellectual conflicts of interest, be trusted to revise the guidelines for the diagnosis and treatment of Lyme disease?
On March 9, IDSA released a project plan to update its Lyme disease treatment guidelines; guidelines The Mayday Project believes already harm patients who are routinely misdiagnosed and unable to obtain medically necessary treatment due to the restrictions imposed by those guidelines. The IDSA plan provides a period for public comment, which ends April 24.
Mayday co-founder Josh Cutler says, "What's most disturbing is that the 2015 IDSA review group contains members who are not coming to the task from neutral positions." According to Cutler, "Six people involved in the 2015 guideline revisions helped co-author the 2006 guidelines. The seventh person led the internal IDSA review of those guidelines after a state investigation in Connecticut. These seven people, at the very least, have inherent intellectual conflicts of interest. In addition to authoring or reviewing the 2006 guidelines, they have continued to publish articles maintaining the view that there is no convincing evidence for the existence of chronic Lyme disease."
Click here for full release:

Saturday, April 18, 2015

What Is Powassan Virus? Rare Tick Infection Could Be Worse Than Lyme Disease

Doctors in the Northeast and Great Lakes regions are warning Americans of a rare tick-borne illness they say is more serious than Lyme disease. Nobody is known to have contracted the Powassan virus yet this year, but it has been found recently in ticks in Bridgeport and North Branford, Connecticut. Officials are urging people to be vigilant as they head into summer, when ticks tend to be most active.

Friday, April 17, 2015

Lyme Patients Launch Campaign to Protest of IDSA Guidelines

Wow. This seems big. A total of 554 thirty-second ads?!  



Lyme Patients Launch Aerial Campaign to Support Boots on the Ground Protest of IDSA Guidelines


ARLINGTON, VA, Friday, April 17—The Mayday Project Lyme patient advocacy group announced the launch of a television advertising campaign to support its boots on the ground protest scheduled for April 29 through May 1 at the headquarters of the Infectious Diseases Society of America (IDSA). 
The ad raises awareness about the "hidden" epidemic of chronic Lyme and the harm caused by the IDSA Guidelines for diagnosis and treatment of Lyme disease.
The campaign includes 554 thirty-second spots that will run throughout the Washington, DC metro area, including Arlington County, VA, where IDSA's headquarters is located. The ads will run on CNN, Fox News, the Discovery Channel, and the Weather Channel through May 3.


Clues to How an Electric Treatment for Parkinson’s Works

In 1998, Dr. Philip A. Starr started putting electrodes in people's brains.

A neurosurgeon at the University of California, San Francisco, Dr. Starr was treating people with Parkinson's disease, which slowly destroys essential bits of brain tissue, robbing people of control of their bodies. At first, drugs had given his patients some relief, but now they needed more help.

After the surgery, Dr. Starr closed up his patients' skulls and switched on the electrodes, releasing a steady buzz of electric pulses in their brains. For many patients, the effect was immediate.



Thursday, April 16, 2015

Eating Healthy Can Be A Mental Disorder- Orthorexia

I guess anything can be taken too far. Now they have a name for trying to eat too healthy! But as a contributor to the medical listserv from where I received this story, 

"Have no fear- "orthorexia can successfully be treated with a combination of cognitive-behavioral therapy, psychoeducation, and medication."   Or my preference to that really unexciting 'standard of care'- lots of ice cream and cake!

Officials Declare "Eating Healthy" A Mental Disorder

 2015 Feb 18;11:385-94. doi: 10.2147/NDT.S61665. eCollection 2015.
The clinical basis of orthorexia nervosa: emerging perspectives.
Koven NS1Abry AW1.
Author information

1Department of Psychology, Bates College, Lewiston, ME, USA.

Orthorexia nervosa describes a pathological obsession with proper nutrition that is characterized by a restrictive diet, ritualized patterns of eating, and rigid avoidance of foods believed to be unhealthy or impure. Although prompted by a desire to achieve optimum health, orthorexia may lead to nutritional deficiencies, medical complications, and poor quality of life. 

Despite its being a distinct behavioral pattern that is frequently observed by clinicians, orthorexia has received very little empirical attention and is not yet formally recognized as a psychiatric disorder. In this review, we synthesize existing research to identify what is known about the symptoms, prevalence, neuropsychological profile, and treatment of orthorexia

An examination of diagnostic boundaries reveals important points of symptom overlap between orthorexia and anorexia nervosa, obsessive-compulsive disorder (OCD), obsessive-compulsive personality disorder (OCPD), somatic symptom disorder, illness anxiety disorder, and psychotic spectrum disorders. 

Neuropsychological data suggest that orthorexic symptoms are independently associated with key facets of executive dysfunction for which some of these conditions already overlap. Discussion of cognitive weaknesses in set-shifting, external attention, and working memory highlights the value of continued research to identify intermediate, transdiagnostic endophenotypes for insight into the neuropathogenesis of orthorexia

An evaluation of current orthorexia measures indicates a need for further psychometric development to ensure that subsequent research has access to reliable and valid assessment tools. Optimized assessment will not only permit a clearer understanding of prevalence rates, psychosocial risk factors, and comorbid psychopathology but will also be needed to index intervention effectiveness. 

Though the field lacks data on therapeutic outcomes, current best practices suggest that orthorexia can successfully be treated with a combination of cognitive-behavioral therapy, psychoeducation, and medication. 

diagnosis; endophenotypes; neuropsychology; orthorexia nervosa; psychometrics; treatment
Link to abstract-

Wednesday, April 15, 2015

Another Powassan Virus article

A New Incurable Virus Found in Bridgeport and Branford


Augh.  Here’s a reason to freak out.  A new virus similar to Lyme disease has been detected in Bridgeport and Branford.  The bad news?  There’s no treatment for it and it may be deadly.  The good news?  No human has contracted it yet in our state.

It’s called “Powassan” and it’s a tick-borne disease.  Unlike Lyme disease where your symptoms show up relatively quickly, this virus can show no signs for up to a month.  Like Lyme disease, if contracted, one may start getting headaches, nausea, and fever.  It can attack the central nervous system and trigger meningitis.

Last year 12 people in the country contracted the disease.  People are being urged to wear plenty of clothing and to cover up skin whenever traveling into wooded areas.  So far we couldn’t figure out where or how they detected the virus in those towns.  In the meantime if you like to freak out over diseases that most likely will never affect you, here’s a super comprehensive YouTube video about the new virus.

Here's the original article link:

Friday, April 10, 2015

Experts warn of potentially deadly tick-borne illness similar to Lyme disease

Published April 10, 2015
Every year in the United States, there are at least 20,000 confirmed cases of Lyme disease, a painful but treatable tick-borne illness. But now, experts are warning of a faster-acting, untreatable and potentially fatal sickness called Powassan virus that is most commonly found in the same tick that hosts Lyme disease.